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Sunday, November 28, 2010

There was an interesting article in Newsweek regarding food and social class in America. Eating well, is becoming more expensive and as a result, can be considered a luxury, at least if you are poor. If you are comfortable money wise, you probably don’t give it much thought however if you are poor or have less resources for food, good, healthy food is considered a luxury item. More important is the link between food and good health. If you subscribe, like I do, that food is your ticket to reversing disease and good health, being able to purchase organic foods really is a luxury item. On the flip side, having to purchase poor quality food (non-organic fruits and vegetables and/or factory farmed meat and poultry) is a quick ticket to ill health and therein lies the real dilemma. The real issue with food and health is that we messed everything up in our quest for cheap food. In the quest, more pesticides/chemicals were used and if you’ve seen the documentary, “Food Inc.”, you know precisely what I am talking about.

As the article states, being able to afford really good food is a bit of a class definer, whether you like it or not. Let’s face it, being able to spend $150 on an organic, pastured, heritage turkey was probably not in a lot of people’s budget this year. If you enjoy organic food, you have most likely tasted the difference between organic and non-organic food and understand the nutrient differences as well. But not having all of the hormones and antibiotics in the poultry makes a difference as well; you have to wonder how those things contribute to disease. After all, you are what they eat. But being able to afford really good food is also becoming a "health definer".

I found the article interesting because it’s something I have been thinking about a lot for the past year. As a single mother, I work part time to care for Dear Son. There’s no other way to really do it, now that he is total care. As a result, I live on a very tight budget. I buy the very best food that I can and consider organic food not only as a luxury item but as a ticket to great health. Due to Dear Son’s fragile health, and since I don’t have a great health insurance policy, I have to work hard to remain healthy. I divide my grocery store dollars between Whole Foods and another local chain. I make nearly everything myself and you’ll never find a box of anything in my freezer. I do this because I want to know what’s in my food but also so I can spend more money on high quality, organic food. I have eliminated other items in my budget so I can eat higher quality foods. Certainly there are some weeks that I can’t buy as much organic as I want, but I have some foods that are non-negotiable in terms of buying organic. Other weeks, I just buy less or do whatever I can to make ends meet.

Over the years, I gave up different things, In the beginning, I avoided any foods with artificial sweeteners, msg and high fructose corn syrup then I eliminated processed foods, and genetically modified foods and oils (canola, sunflower, safflower, soybean and vegetable). I eat whole foods and whole grains and aim for hormone free, organic, pastured beef and poultry fed without GM soybeans; this is very hard to find and I am still researching farms to find it. In addition, I’ve removed nearly everything with BPA in my kitchen and have eliminated nearly all canned foods. I am a firm believer in foods that reverse disease. I still have more changes I’d like to make but they take money and therein lies the dilemma. The problem is that I know that eating well prevents and reverses disease however what really bothers me is that I can’t afford to eat like I want to, at least not now. While Whole Foods isn’t the end all, it is the best health food/type grocery store on a mass level. If money weren’t an issue, I’d eat differently. I’d buy a share of a cow and drink raw, unpasteurized milk. I’d purchase organic bison from farmers who fed their animals a regular diet or organic diet excluding soy, that took the time to feed the animals right until it was time to slaughter and then used humane methods on their animals. I eat all organic fruits, vegetables, dairy, grains and nuts and purchase them from local farms. I’d eat organic beef and poultry only from pastured animals. It also drives me crazy when people who can afford to eat better, don’t. I mean, if you can afford to eat organic, why wouldn’t you? There are weeks when I would love some organic brussel sprouts but instead I have to purchase the non-organic ones.

Even more important, is that I’d love to feed Dear Son differently. I’ve tried pureeing fruits and vegetables for him however it clogs the feeding tube. Without a high powered blender, like a Blendtec or Vita Mix, I can’t get the puree smooth enough for tube feedings.

My day after Thanksgiving turkey sandwich made with factory farmed turkey, organic spinach, homemade bread and an organic banana.

What is most troublesome about food in America is that eating well or eating really healthy, costs money. I consider it a luxury item for sure. This Thanksgiving, I ate a regular store bought turkey but my heart was set on a heritage, pasture raised, organic bird. I purchased the store bought turkey because that is what I could afford. Of course, I couldn’t stop thinking about the conditions the animals were raised, how they were most likely bred to have more breast meat, when I paid only $.48 a pound; yes, I know turkeys are a loss leader this time of year, but still. I cring at the thought that it most likely was treated with hormones or antibiotics and wondered how that might affect me. A pasture raised heritage turkey on the other hand, could cost up to a half month’s worth of grocery money, depending on the size and farm it was purchased from. I am one of those people that spend my free time researching farms, how the animals are raised, finding out what exactly the animals are fed and want to know the time to slaughter (the longer the distance to slaughter stresses the animals and hence affects the flavor of the meat). I research the eggs I buy, the milk I buy, etc.

If you really believe that food reverses disease and that food is your ticket to good health, being able to afford organic food and good food is definitely a luxury item since it costs more. Some people try to get around it a bit by paying attention to the “dirty dozen”, which is a list of fruits and vegetables that have the most pesticides or chemicals used and that somehow, fruits and vegetables that aren’t subjected to heavy chemicals can be purchased non-organically. Some new studies however show a vast difference in the nutrition between organic and non-organic fruits and vegetables. For me, this is important but equally as important is taste, and when I purchase an organic sweet onion, the flavor is amazing as opposed to a non-organic one. While I don’t notice that in all organic foods, for some fruits and vegetables, like organic bananas and organic onions, the taste is significantly superior and I have to believe the nutrition must be as well.

Underlying the article and the cost of food is the real issue of health. I have been disturbed for some time over the quality of the food at Big Academic Medical Center. On occasion, I’ve had parent trays. Parent trays are appreciated since the refrigerators in the hospital rooms tend to freeze the fruits/vegetables, regardless of the setting. I’ve given up trying to bring my food down, since the refrigerators are useless and purchasing meals at an on-site restaurant is not budget friendly, especially for longer hospital stays. As a parent, I select my meal from the menu and being a children’s hospital, the menu is geared towards kids. One of the most striking things about the menu, is that you can’t find any fruit on the menu. Can you imagine that? That is, unless you look under “desserts”. I searched high and low the first time I saw the menu looking for fruit because I couldn’t believe that it was non-existant on the menu. So under dessert, you can find things like a banana. Yes, a banana is considered dessert and not a fruit, at least at this Top 100 Hospital. I suppose if we called a fruit a “fruit” maybe kids wouldn’t eat it. The menu also has some heart healthy options, none of which I would ever remotely consider “heart healthy”.

If you want lettuce or greens for a salad, you won’t find any spinach or romaine lettuce. The only lettuce on the menu is iceberg, which as you know, is practically devoid of any nutrition. Now I understand that they may not be able to afford to have all organic items, but I would hope that there would be some fruits and vegetables with a higher nutritional profile. And yes, I realize these are kids but that doesn’t mean we shouldn’t offer higher quality food.

I guess what really bothers me a lot about Big Academic Medical Center is this. We go there because there are world class physicians that provide high quality healthcare and do research accordingly. However, there seems to be a large disconnect in the whole wellness category; on the one hand, you have world class physicians to fight diseases and then you have a hospital menu that contributes to them.

If you believe like I do that food prevents and/or reverses disease, then wouldn’t you expect that the menu would reflect that? Here’s what I’m thinking. When you are in the hospital for an infection, I’d expect a big spinach smoothie loaded with fruits and antioxidants. Instead, there are no fruits with antioxidants in them; there aren’t any blueberries, strawberries, raspberries, organic or otherwise on the menu. I am certain this is a cost issue for sure. Instead, you can get a banana or an apple. You can though, get milk in different colors and any kind of kiddie sugary cereal the kids want. If you believe that refined sugar lowers immunity then it would seem that foods with refined sugars would not be allowed on the menus. Somehow, disease prevention and using food to cure disease, doesn’t coincide with the hospital menu.

Nestle Compleat Modified Formula

On the topic of food and chemicals, are the infant formulas. Most of these formulas have 100% of the RDA and yet are in a base of corn syrup. I worked with a nutritionist at another Big City Children’s Hospital to find a better formula for Dear Son. I told her I wanted a “natural formula” and one made from “real food” but I wasn’t sure anything like that existed since formula isn’t really a “real food”. She recommended a “real food” tube feeding formula, made with traditional foods. It provides nutrients found in real food and contains chicken, peas, carrots, tomatoes and cranberry juice. All of that is listed on the front of the label. It sounds good and it costs about 50% more than the standard formula. It sounds great until you read the back of the label which lists the ingredients: the first item is water, the second is corn syrup, followed by another sugar and then the chicken puree, the tomato puree and then canola oil (which is probably genetically modified). The cranberry juice is made from concentrate. Is this really the best we can do for our kids? (Personally, I don't ever think that any nutritionist working at any children's hospital should ever recommend any formulas with corn syrup in them. Then of course, we wonder why the kids gain weight on them!) And yes, the formula comes in a can, which most likely has BPA in the can lining. And if we go down the BPA path, we can add the plastic tubing, the plastic feeding bags, plastic syringes, plastic extension tubes, all encased in plastic, along with plastic covered diapers and plastic gloves. Now we are completely off topic.

The bottom line is this…if you want to be healthy, you have to eat well. And the reality is that the more educated a person is, the better they can eat and more often than not, they have a better job to do that. And therein lies the great divide. While people with fewer resources can make better choices, the reality is that they will never be able to eat really well. And now that our food has changed, with an emphasis on creating “cheap, factory farmed food”, we now have changed the paradigm. To eat well and to prevent disease costs money. And for those who can’t afford to pay, they may pay an even higher price with poor health and more disease. And as the paradigm shifts, while more money won’t always translate to better health (meaning they have to want to buy healthier food), not being able to afford better food will make it tougher to achieve good health. In the end though, I think we should expect that all heathcare providers should provide food that helps prevent disease. Now, if only we could all agree on what that food should be.

Thursday, November 25, 2010

This year, we'll celebrate Thanksgiving at home. Last year, Dear Son was in the hospital recovering from the H1N1 and a viral pneumonia. It was a rough month with Dear Son on a ventilator and then the long, long recovery. Last year, I watched the Food Network on television at the hospital. Dear Son was released that night however for the next few days, things were rough. Although his oxygen saturations were adequate at the hospital, they dropped significantly when he got home. For three or four days, he struggled to breathe and I did breathing treatments manually every two hours or so. It was a hard time for both of us. The days and weeks after that, he'd cry non-stop in pain but we didn't know why. He was hospitalized again in December and then in January until they located the source of his pain-a pnematosis (free air in the lining of the bowel wall); while it shouldn't have caused pain, it did. It took months before he was able to sit up and it wasn't until May of 2010 where he could sit up long enough to take a plane ride to Disney for his Make a Wish trip.

We've spent a few Thanksgivings in the hospital over the years. And for a long time prior, I admit to taking many of them for granted. After all, there was plenty of food, all of the family there and of course, all of the fun. Having spent last year in the hospital with Dear Son, and many others, I have a new found appreciation for Thanksgiving. I think my worst Thanksgiving, was a few years back, when Dear Son was hospitalized, all of the restaurants were closed, and I ate a ham sandwich out of the vending machine, since the cafeteria was closed at well. At that time, I remembered all of the wonderful holidays with delicious food and all of the fun.

Sometimes, it's easy, when things are going well for people, to overlook all of the blessings they have, myself included. My perspective is a bit different now. After nineteen years of seeing the world from Dear Son's eyes, I look at Thanksgiving with more grace. I thought it might be nice to count the ways, we are blessed.

You know you are blessed when:

You can spend Thanksgiving at home. There are many adults and children who will spend Thanksgiving in a hospital. Some of them won't survive. We are blessed to spend it at home this year.

There is plenty of good food to eat. Food banks are overflowing with people in need of a good meal. I like to donate to a mission in our community for the holidays.

You can eat and swallow food. Dear Son has been on gtube feeds since 2006. That doesn't mean he doesn't miss it. He can still smell the food and loves to cook. Sometimes I give him a little taste, about the size of a dime, if that. He can't swallow anymore and can't manage food by his mouth.

You can have a conversation with your kids. I've never been able to have a conversation with Dear Son since he can't speak. I'd love to know what he was thinking and feeling.

You have all of your family members at the table. I lost my sister to colon cancer in 2009. I never dreamed I would lose her so young.

And finally, don't forget to make room at the table for the disabled. I know when we would sit down at the table with extended family, space was tight and it was always easier to feed Dear Son off to the side in his wheelchair or feed him at the table before everyone was seated; this was when he could eat by his mouth and not via a feeding tube. Now I know that was a mistake. When I sat in the living room with him, I could hear everyone laughing and having a good time at the table and it wasn't the same. It was then that I realized the importance of socialization at the table. Now, I make sure to sit Dear Son in the wheelchair at the table and enjoy it with us.

So today, I'll set a pretty table, pull Dear Son's wheelchair up to the table, and be thankful for all of the food we have and for the family who will celebrate Thanksgiving with us today. I will also be thankful for all of you, who always support us and pray for us. Your prayers for my Dear Son mean a lot.

Happy Thanksgiving!

Note: Photo of Dear Son was taken two days ago while he was napping. He is healthy and doing well this year. Tablescape is my Sugar Maple tablescape. You can see more photos here. That is also today's tablescape for Thanksgiving.

Monday, November 15, 2010

On Friday, Dear Son turned 19. As you know, Dear Son graduated high school last year and now attends classes at a Transition Center. This facility is run by the school district and special needs students can attend this program through the age of 21. This is a picture of Dear Son and his male classmates on his birthday. I love this picture of the kids. They all look so happy. I especially love the smile on Dear Son's face. He really loves a party and loves people.

When he arrived home on Friday, in his backpack was a large envelope full of birthday cards from his classmates.

There were several themes.

The Sports Theme

Country MusicArts & Crafts Theme

It was obvious, some of them took a long time to make.

Then there were the well wishes. Some cards had simple messages.

Some cards were tricky...here's a Chicago Bulls Photo on the front...

And a Chicago Bears message on the back of the card.

Some messages were sweet...

Some were very thoughtful...

And some probably weren't meant for Mom to see...

Regardless, Toby Keith says...

After the party at school (Dear Son goes half days), the afternoon bus driver serenaded him by singing, "Happy Birthday". Dear Son was all smiles. When the bus driver dropped him off, he asked if Dear Son was 20 or 21. I said, "19". The bus driver joked that if he was 21, he was going to buy him drinks at the "Tilted Kilt". I laughed and said that Dear Son doesn't drink however I am sure he would love the eye candy at the Tilted Kilt.

As we walked up the drive, the florist drove up and delivered some flowers to me. The note said the flowers were for me (not related to Dear Son's birthday) but the balloon was for Dear Son. I told Dear Son the balloon was for his birthday and asked if he wanted to hold it. He held that balloon all weekend and loved it.

We celebrated some more at home. All in all a great 19th birthday. It was wonderful to see him so happy.

Friday, November 12, 2010

One year ago I was in despair. Dear Son was unconscious on a ventilator and what was supposed to be his best birthday ever, was his worst. In May of last year, Dear Son had his vagus nerve stimulator replaced and his lung collapsed. It was a bad hospitalization and I vowed that if he made it through, I would contact the Make a Wish Organization and plan a trip. I wanted him to be able to look forward to something else and to pack for something else, other than to go to the hospital. I just wanted to see him happy.

The wish was approved quickly and I met with the organization. I decided that I’d plan the trip around his 18th birthday. How exciting that would be for Dear Son. Extensive planning went into the trip and we made sure to get his swine flu, flu and pneumonia vaccines in order to take our trip. When we arrived at the hospital, the swine flu vaccine was non-existant. They had run out despite the fact that we scheduled the appointment some 25 days prior. Five days later, Dear Son came down with a slight fever and within 24 hours he had sepsis and within 48 hours he was on a ventilator. The Make a Wish trip was dashed.

Last year, a few days prior to his 18th birthday.

It was a devastating time. He got the swine flu and a viral pneumonia and was on the ventilator. His body was filling up with fluid. The ICU hospital staff was horrible-there was such hysteria over the swine flu and most didn’t know the procedure. The days were long in the ICU. After a while, you know the drill: vent, vent settings increase, patient improves slightly, vent settings decrease, vent removal, two more weeks recovery and then go home. How could this happen? I felt at that time that Dear Son had been through so much and the trip would be the one thing where he would experience total joy.

Photo of Dear Son four days prior to his 18th birthday.

As he lie on the vent, I thought about his little life. Some sixty plus hospitalizations. No child deserves a life like that. I was so sad, I mean, I try not to feel sorry for myself but why couldn’t my Dear Son have a great life? Why did he have to go through such suffering in his life?

His birthday arrived and I wondered if it would be his last. I desperately wanted him to survive. I thought it was horrible in 2006, when he had the MRSA pneumonia and almost died on Mother’s Day (he had a transfusion that saved his life). I thought that would be the worst possible outcome. But to die on his birthday, would be, devastating.

He was taken off the ventilator on Friday, the 13th, the day after his birthday. He wasn’t quite ready but they typically don’t like them to be on the vent beyond two weeks. He struggled to breathe. He made it through and came home last Thanksgiving but yet he struggled to breathe for weeks after that, then had pain issues and more hospitalizations for another two months before they located the source of his pain. Needless to say, it was a tough year. In May, he finally got to take his Make a Wish trip and we had a wonderful time. As his birthday approached this year, I was pretty nervous. October was rough. His breathing was terrible at times and I feared he was getting pneumonia. I knew I did not want to see him in the hospital again this year. Each time the hospitalizations get a little bit harder for him and a little bit harder for me. It’s not easy to forget.So today, we celebrate his 19th birthday. It’s a glorious day. He's wearing his new birthday outfit for school. I baked a cake to send to school with some homemade buttercream frosting. He won’t be able to eat any of it, but he’ll enjoy the celebration. They’ll have a party for him and he’ll love all of the hoopla surrounding his birthday. He’ll smile when they sing, “Happy Birthday”. He’ll laugh when they clap for him and he’ll genuinely love all of the excitement around the day. I told him before he went to bed last night that it was going to be a great day today. He loves when I tell him that.

Life is very, very good today. I am really excited and thrilled that we have a 19th birthday to celebrate. After the darkest hour last year, a normal, happy birthday is about the best thing I could ever have. Never take birthdays for granted. I told Dear Son that when they light the candles on the cake today, to make a wish. I hope that whatever he wishes, come true. I’ve been blessed with a lot of things in my life, but the biggest blessing I have ever had, is spending another birthday with my Dear Son.

Note: Dear Son is nineteen years old and suffers from seizures, dystonia and is severely developmentally delayed due to a random mutation of the ARX gene. He also has a progressive neurological disease.

Wednesday, November 10, 2010

This week I thought I'd create a tablescape for two. How nice it would be to have dinner here on a cold fall night, with the candlelight glowing and the aroma of dinner cooking when you walk through the door after a long day. For me, tablescapes are a way of living elegantly. We often see people dress elegantly but I think how a person lives tells you a lot more about them than anything else. Living elegantly is not just about beautiful things but rather going that little extra mile every day for others and for yourself.

My color scheme this week was gold and white. The foundation of my table is a white tablecloth topped with a gold sheer embroidered overlay.

Gold chargers were added. For plates, I decided to use these clear, glass plates with gold edging. They were part of a serving set however I loved the look of them under the light and decided to use them in lieu of the dinner plates. The salad plate is Spode Mansard, a fine bone china. I fell in love with them the first time I saw them at Macy's back when it was still Marshall Field's.

I added some crystal tea light candles and scattered them around the table. As for flatware, I would love to have some gold flatware at some point. I mean, can a woman ever have enough gold in her home? I think not.A pair of candlesticks for some added glamour and symmetry. I love pairs of just about anything in a home. Can you tell I am a traditional girl?

A sheer, gold, embroidered napkin completes the ensemble.

For the centerpiece, I kept it simple with a pillar candle in a pretty container. The gold swirls mimic the embroidery in the overlay. I also used some gold, beaded candleholders. It was very challenging to get close ups of the details of this table due to the glare from the light and from the gold. The crystal goblets are Monroe by Lenox. I love the swirl on the stem and the gold rim. There is simplicity in their elegance.

One last view of the tablescape. I hope you enjoyed my tablescape for two.

Tuesday, November 09, 2010

This might seem a bit off topic today, but I had a friend start a part time job reading obituaries. It got me thinking about them in general. I used to read obituaries on and off over the years. I found them fascinating when they actually talked a little about the person's life instead of the standard ones that are more informational and give the family history. My favorites were those that talked about the business or charity that they started and then gave some perspective on what that person thought was important at that time in their lives. After a while, you could get a sense at to which people lived really fulfilling lives as well as what was important to them.

Along those lines, I got to thinking about obituaries in general. I don't know if they have something like this (it would have been smart to google this prior to posting) but it would be interesting to have people record their own obituary. It would work like this: you would go out to an internet site and click on the name for a person that has just died. When you clicked on it, their voice would come on and talk about their life and what they thought was important. There would be time limits of course and prior to that, in the introduction portion, they would list the particulars that "X" is survived by "Y" and "Z" and the number of children.

So how would this work exactly? You'd set up an account at an internet site filled with your particulars (family history, etc.). Then, you'd simply record a few minutes of whatever you thought was important about your life. Each year on your birthday, you could go and update the piece or select the option to leave the recording the same. Since life is unexpected, you'd have a recording that is somewhat current and yet, it's not like you would be asking people to record something prior to their death. In the case of people with dementia, you might choose to leave the recording there when they were vibrant and still had their lives in tact versus recording in the end stages of a disease. In other cases, where someone is in the end stages of a terminal disease and they are aware of it (say the end stages of cancer), they might choose to update it with a new message. Your recording would not become public until you actually died.

When you died, your loved ones could go to the site, click on your name and hear your voice. So many times, people will say that they missed hearing someone's voice or they'll come across a recording of sorts with their voice on it. How nice it might be to hear a loved one talk about how the greatest joy of their life was their family or spouse. It also might be wonderful for grown children, who lost a parent when they were young, to hear their parent's voice and to know how much they were loved. You could add video to this of course and there are probably a whole host of enhancements to make but this is the gist of it.

Thursday, November 04, 2010

Sometimes, it's hard to forget. Just one year ago, we were one week away from my son's Make a Wish Trip to Disney. I thought it would be great to go on the trip on his 18th birthday. It would be the best birthday ever! On Halloween, he had a slight fever that wouldn't go away. The next day we took him to the Emergency Room to check the fever and to find the source. By the time we got there, he had low oxygen and sepsis. Within 48 hours he was on a ventilator fighting for his life with the H1N1. Our trip was cancelled.

His birthday arrived on November 12th. It was a Thursday. What was supposed to be his best birthday ever, was his worst. Instead, he was on the ventilator. On Friday, the 13th, birthday flowers arrived for him.

They were beautiful. Later that night, he had complications and they were at a turning point. They had to try to get him off the ventilator or he wasn't going to make it. Somehow, you really don't like those odds on Friday the 13th. They removed the ventilator and he struggled to breathe the entire night. On Saturday, the 14th, the sun shone brightly through the room of the Pediatric Intensive Care Unit. My son has been in the hospital some 60 plus times however when the sun shines in the room in the ICU, it is usually a turning point and sign that things will get better. That day, I knew he would make it, although he was far from being out of the woods. I was so happy to have him off the ventilator, that I decided to make a pretty tablescape.Proof that you can make a tablescape anywhere, I asked the nurse for two perfectly pressed pillowcases. She brought me a few that were the best pressed as hospital linens go. I folded them over and placed them on the hospital tray. I added Dear Son's birthday flowers as a centerpiece and brought out my plastic plates and silverware that I keep in a box for times like this when I am in the hospital. It saves me time from having to hunt down a plate and plastic silverware, which I abhor. (To be honest, I dislike paper plates, plastic plates, plastic silverware and the like.) I have to use plastic plates when I am in the hospital since real china just doesn't transport well. The tablescape brought me great joy but something was decidely missing. I decided to take one of the carnations and place it in a medicine cup. I placed it in the right hand corner of the hospital tray and somehow this tablescape was now complete. The tablescape brought me great joy that day. It wasn't as pretty as the tablescape that I created for Tablescape Thursday, the afternoon before we left for the hospital. The tablescape that was sitting at home in my dining room. No, it wasn't as glamorous as that by any means. But this one brought more joy. It was a celebration of life, of my son being off of the ventilator. And that is ultimately what tablescapes are all about-about celebrating the good times in life with people you love. And that day, I celebrated the tablescape with my son.It would be a few more weeks before he could go home and when he did, it tooks months to recover. In May, we were able to take his Make a Wish Trip which he enjoyed. To see more tablescapes, please visit Susan at her blog, "Between Naps on the Porch".

Monday, November 01, 2010

Shortly after I came home from work today I discovered that my Yahoo email had been hijacked and an email was sent out from me to people in my address book with a link to a Canadian Pharmacy site. If you have received an email from me, please delete it immediately;I have since learned that this is the Kneber Virus and I am working on removing it.

On a different note, Dear Son is having some issues again. Last Wednesday, I noticed that Dear Son was retaining fluid and his stools were getting harder. In addition, his urinations had decreased. I thought I had discovered the source of the issue and was giving him more Miralax to get him back to normal. By Friday evening however, Dear Son started to cry out in pain quite a bit. His stomach was not only bloated but hard. I could feel a mass in there when I pushed on it so I knew that was a problem. I decided to remove his Scopolamine patch and manage his secretions with an anti-histamine that the doctor had recommended a while back. It helps dry up secretions in his throat (his throat muscles are deteriorating and he can't swallow so he'll choke on his own saliva if he doesn't have anything to dry it up). I started to get a little nervous when I was feeding him via the gtube since all of this fluid was going in but nothing was coming out (urinations). Although I was fairly confident I was doing the right things, if I was wrong, his intestine could burst and he'd die of sepsis. (Dear Son had similar issues earlier in the year when he had urinary retention due to the Scopolamine patch. )

I decided to page the doctor to make sure my plan of action was correct. I wasn't sure if he needed to get an x-ray (to see if there is stool in there) or if I needed to decrease the rate of his feedings. The doctor recommended that I decrease the rate of the feeding and give him an enema.

Things improved on Saturday and things started to clear out a bit. He was urinating regularly and had a few small bowel movements. On Sunday things slowed down and by today, he hadn't had a urination in some 30 hours, and that was after he had an enema. I paged the doctor late this afternoon and he made some suggestions so hopefully Dear Son will be feeling better soon.

I probably won't post for the next day or so since I have my hands full so to speak but will try to resume posting later this week.

Note: Dear Son is eighteen years old and suffers from seizures, dystonia and severe developmental delay as a result of a random mutation of the ARX gene. He also has a progressive neurological disorder and is in the later stages of the disease.